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'Newborn screening bill' passes in House

The Minnesota House passed a bill Thursday that allows the state to keep newborn blood samples indefinitely, unless a parent requests the sample be destroyed.

The House passed the so-called "newborn screening bill" by a vote of 69-58.

Supporters such as state Rep. Kim Norton, DFL-Rochester, say the bill would help bolster scientific research.

"Our current law is a tremendous barrier to new test development. Members, the current law is not working for our children, our families or for public health," Norton said. "If allowed to, it's likely the changes we've proposed to the program could save many more lives by adding additional tests to this screening panel."

The bill comes after a 2011 Supreme Court ruling that the Minnesota Department of Health's policy of archiving newborn blood samples violated the state's Genetic Information Act. The screening program collects blood spots on a card from all infants within 24 to 48 hours of their birth, but 21 families sued the agency for storing the genetic material without parental consent.

A settlement of the suit compelled the department to destroy 1.1 million samples.

State health researchers test the blood spots for 55 genetic or congenital disorders for the approximately 200 babies born in Minnesota each day. The researchers had used the stored material to ensure the quality and accuracy of the program by comparing old blood tests to new ones. They also were able to look for emerging trends among newborns in certain ethnic groups or regions.

While supporters of the House bill say it will allow that research to continue, critics say they don't think the state should be able to indefinitely store blood samples that contain an individual's DNA.

"When the public wakes up and figures out the wide latitude that the Minnesota Department of Health has for the use of the blood spots and test results without their knowledge and consent, there's going to be concerns," Holberg said.

The House bill now has to be reconciled with a version that has already passed the Senate.